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. 2022 Jul;9(1):e000914.
doi: 10.1136/bmjgast-2022-000914.

Persistent symptoms are diverse and associated with health concerns and impaired quality of life in patients with paediatric coeliac disease diagnosis after transition to adulthood

Satu Vuolle  1   2   3 , Pilvi Laurikka  1   4 , Marleena Repo  1   2   5 , Heini Huhtala  6 , Katri Kaukinen  1   4 , Kalle Kurppa  1   2   3   7 , Laura Kivelä  8   2   3   9
Affiliations

Persistent symptoms are diverse and associated with health concerns and impaired quality of life in patients with paediatric coeliac disease diagnosis after transition to adulthood

Satu Vuolle et al. BMJ Open Gastroenterol. 2022 Jul.

Abstract

Objective: To investigate the prevalence and associated factors of persistent symptoms despite a strict gluten-free diet in adult patients with coeliac disease diagnosed in childhood.

Design: Medical data on 239 currently adult patients with paediatric diagnosis were collected from patient records. Also, patients completed structured study questionnaire. All variables were compared between those with and without persistent symptoms.

Results: Altogether 180 patients reported adhering to a strict gluten-free diet. Of these, 18% experienced persistent symptoms, including various gastrointestinal symptoms (73%), arthralgia (39%), fatigue (39%), skin symptoms (12%) and depression (6%). Those reporting persistent symptoms had more often gastrointestinal comorbidities (19% vs 6%, p=0.023), health concerns (30% vs 12%, p=0.006) and experiences of restrictions on daily life (64% vs 43%, p=0.028) than the asymptomatic subjects. The patients with symptoms had poorer general health (median score 13 vs 14, p=0.040) and vitality (15 vs 18, p=0.015) based on a validated Psychological General Well-Being Questionnaire and more severe symptoms on a Gastrointestinal Symptom Rating Scale scale (total score 2.1 vs 1.7, p<0.001). Except for general health, these differences remained significant after adjusting for comorbidities. The groups were comparable in current sociodemographic characteristics. Furthermore, none of the childhood features, including clinical, serological and histological presentation at diagnosis, and adherence and response to the diet after 6-24 months predicted symptom persistence in adulthood.

Conclusion: Almost one-fifth of adult patients diagnosed in childhood reported persistent symptoms despite a strict gluten-free diet. The ongoing symptoms were associated with health concerns and impaired quality of life.

Keywords: COELIAC DISEASE; GLUTEN FREE DIET; PAEDIATRIC GASTROENTEROLOGY.

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Conflict of interest statement

Competing interests: LK, KKu and KKa have received personal fees for lectures from the Finnish Coeliac Society outside the submitted work and serve as members of the Finnish Coeliac Society’s advisory committee. All other authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Gastrointestinal symptoms (A) and health-related quality of life (B) in 180 patients diagnosed in childhood with coeliac disease and reporting strict adherence to gluten-free diet in adulthood after a median of 18 years. Patients with and without persistent symptoms are compared and median (horizontal line), lower and upper quartiles (box) and range (vertical line) are shown for both groups. Higher scores denote more severe symptoms or better quality of life. P value marked with an asterisk was no longer significant after adjusting for other concomitant gastrointestinal diseases.
Figure 2
Figure 2
Health-related concerns (A), everyday life restrictions due to gluten-free diet (B) and overall health (C) in 180 patients diagnosed in childhood with coeliac disease and reporting strict adherence to a gluten-free diet in adulthood after a median of 18 years. Patients with and without persistent symptoms are compared. GFD, gluten-free diet.
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